HealingWell
Search Close Search
☰

Surgery Soon...

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/15/2011 8:45 PM (GMT 0)
I have been in the hospital for 7 days now with my UC. This has been my life for 7yrs now. I have not ever known what it is like to be in a remission. So, I am headed for surgery in the next couple of weeks. I am waking up in the middle of the night with panic attacks. I am so afraid about how this will change my life. I have opted for a J pouch considering my age, but I will have a stoma for a few months. This has been my biggest fear since I was diagnosed ( having a stoma ). My surgeon will not be doing this lapriscopy ( sp? ). He told me my incision will be around my naval and down a little bit. Does any one have any advice with coping? I am worried about dealing with my self image, stoma, if I made the right choice, how to prepare for the surgery ( physically and emotionally), etc. I could use any and every type of advice you guys have to offer. I am very close to having an emotional breakdown in this hospital room. If I don't make much sense I apologize. I'm a little dopped up on pain meds at the moment and highly stressed.
Posted 10/15/2011 9:34 PM (GMT 0)
Hi and welcome!!

Please don't worry. I mean, worrying is natural. But try not to worry AS MUCH ;) We have all been there and I know the feeling well. After reading what you wrote I can honestly say, life with an ostomy is 9 MILLION TIMES BETTER than life with flaring UC. The last 7 years will be a distant memory to you.

I opted for a permanent ostomy, and I am thankful every day. I have not regretted it ONCE since I had the surgery. You said you're worried about how your life will change...the change will be 99% positive, honestly. You will feel healthy, you can eat, you don't have to worry about bathrooms, you can enjoy your life. You can do anything with an ostomy that you can do without one. (besides wear a bikini...seriously)

Please let us know if you have any specific questions. You can email me if you want. I don't know how old you are but I had my surgery at 28 and spent most of my 20s being sick.

You will get through this!! Hugs!!!

Posted 10/15/2011 10:04 PM (GMT 0)
If you've been sick for 7 years the part that's hardest to imagine is the most important part -- you won't be sick any more. I also was not in remission for maybe the last 4 years before I had surgery, and you just forget what it's like to not be sick. One thing you might do for emotional prep is to list some things you'd like to do and foods you'd like to eat and that sort of thing.... things you haven't been able to have because you're sick. Then start imagining your life with those things in it again. I was imagining eating a burrito with beans and cheese and veggies and spicy stuff on it, not really quite believing I'd be able to, and then by a few months after surgery, I was eating them regularly. I was also reconnecting w/friends I hadn't seen in years, going for walks without worrying about being near a bathroom, having people tell me I looked good, etc.

The bag takes some getting used to (and mine is permanent), but it is so much easier than unremitting IBD.

If there's a way for you to meet someone who had the surgery in person, I'd recommend. The ccfa or uoaa might be able to hook you up w/someone around your own age. I met someone before surgery, and it was just so clear that she was healthy, dealing w/ordinary, everyday things, while I was gaunt and pale and sick all the time.... But if not, we can help too.

It sounds like you're very stressed now.... might be good to see about some meds or a therapist, could help. A stress reduction course or learning to meditate or do other techniques is good too (can be hard if you're too sick)
You might also go with the age old "one day at a time" for coping.... trust yourself, you'll learn what you need to know and deal w/what comes up.

Feel free to keep asking more specifics and let us know how you're doing.
Posted 10/15/2011 11:16 PM (GMT 0)
I had UC for 7 years too. I did have periods of remission though, but eventually it got too much and to be honest I was sick of having to put my life on hold all the time. All the things you've put above are totally natural worries - I had all the same thoughts as you. I really thought I wouldn't be able to cope with a bag and it would ruin my life etc...but...it didn't and it hasn't AT ALL. It's great feeling UC free (and medication free!) and knowing you're not going to flare again.

I'm still 2 ops away from a J-Pouch, but I'm not finding the stoma much trouble. Yeah you might have some body image issues, but if you're having a pouch, they'll only be short lived. Besides which, it might seem horrific at first, but you'll adjust and it'll just become a part of your life. (It has for me and it's only been 8 weeks since my op)

Just ask any questions you need and everyone on here will help/support you. I don't think I'd of coped so well without this forum.

I know it seems overwhelming at the moment, but you'll pull through and you'll feel so much better for it. If you've been ill for 7 years it will be such a relief to be free of UC.
Posted 10/16/2011 1:41 AM (GMT 0)
i had surgery a little over 4 years ago, i have a permanent bag also, it took some getting used to but its soooo worth it!
i kept thinking, when i wake up and they say, would you like some juice? i can say YES i want some juice. that sounds so dumb but juice tore my stomach up when i had UC.
make a list of all the things you miss out on because of UC, and then remember you can do all those things afterwards.
Heres a few things you need to know.
When you go for your stoma marking, be sure you wear your regular everyday clothes, even though it will only be temporary if it's not in a good place it will make life much harder.
At first your output will be bright green and smell like death warmed over, and you will probably have on a clear bag. Don't freak it won't always look like that, and you can get different bags later. I was so upset when i saw that clear bag and that green stuff, i thought i was gonna have to look at that forever.
And don't be surprised if you come up with some of the dumbest reasons to not have surgery in the next few weeks, just be sure you keep remembering the reasons you should have surgery!
good luck!
Posted 10/16/2011 2:23 PM (GMT 0)
It is natural to be overwhelmed and scared. I used the month I had between being in the hospital with UC and my eventual permanent ileostomy surgery (what I chose over a j-pouch for my own personal reasons) to try to approach things as logically as I could instead of letting the fears and anxiety take over and stop me from making sound decisions. I looked at my biggest fears and tried to find people on the internet who had gone through surgery and had successfully overcome those challenges. For instance, when I was worried I wouldn't be able to wear a swimsuit, I sought out pictures of ostomotes in swimsuits to see that, yes, not only is is possible, but people still look great in their swimwear. I was afraid I wouldn't be able to rock climb, so I searched out climbers with ostomies and contacted them to hear their encouraging stories. I know it is hard, but try to search out the positives, which there are many. I can honestly say that once I started to research things, I became excited for my surgery. I was so tired of being sick and began to realize that surgery was going to give me my life back and get me off some pretty harsh medications. And it has! Life is incredibly good for me now.

In the weeks after the operation, things are hard, but remember that they do get much better. As you heal up, output starts to slow down, one learns how to master the appliance and pain fades. My first few months were hard, but now I feel completely normal and really don't think about my ostomy pouch that much... except for the thoughts of thanks that pop up in my head every time I am able to do something that I couldn't do when I was sick.

Hang in there, you will get through this.
Posted 10/16/2011 4:46 PM (GMT 0)
Thank you so much for your encouragement. I have been having nightmares for 3days now, and waking up in panic attacks over the surgery. I know it will be good for me. I am leaving the hospital today, but I still feel very sick. So, I think it will be a good change to leave the hospital after the surgery and not feel that way. I think the biggest fear is the fear of the unknown.
Posted 10/16/2011 6:56 PM (GMT 0)
I posted on your thread in the UC forum but I just wanted to wish you luck with your surgery. Any surgery is scary and this is a big one. You will do great and you are going to get your life back. Having the stoma wasn't as bad as I thought is was going to be. And if you are just having it temporarily, the time will fly by, believe me. I love my J pouch and it has literally saved my life.

Wishing you a speedy recovery!
Posted 10/16/2011 7:04 PM (GMT 0)
Hi Jellybean,

everyone has basically said it all. I can only add that I had the same panic and fear in the three weeks before my colectomy. I can only add that the reality was not as bad as the fears leading up to it. So even if you can't find enough peace of mind now, just know that you will be feeling better after the OP, not just physically, but emotionally.
Posted 10/17/2011 1:47 PM (GMT 0)
Jellybean, having a stoma will change your life.....but for the better. Being able to eat food, not be in pain and starting to enjoy life and make plans will more than compensate for having a bag stuck on your stomach. I had my ileo at 20 yo after 3 years of really bad aggresive crohn's. Nothing worked, no meds put me in remission and food was my enemy, my life was work, home, bathroom. I spent more time in the bathroom than anywhere else. I couldn't go out with my friends or do anything at all. The worst thing of all was the pain, it was there all the time. I remember coming round from the op and thinking they must have given me really strong painkillers as I can't feel any pain. When the nurse came round I asked her what they have given me, she was stunned as I hadn't had any pain relief at that time and strongest I had was a paracetamol. They couldn't stop me eating and I couldn't believe I could eat again without pain or running to the bathroom.

All operations are scary but this one will make your life so much better. Start making plans for what you want to do when you're better.
Posted 10/17/2011 8:07 PM (GMT 0)
Well, my surgery date is scheduled for 10/27. I am suppose to visit the surgeon tomorrow to go over a few things. Do you guys know of any questions I should ask about the upcoming surgery? I feel a little in the dark, and do not know where to begin.

Just a little side note....my husband has been extremely supportive during this entire process. More than I could have ever imagined, but he still seems to say some things that set me back a bit. I'm not sure how to deal with them.
My surgery will be about 7 days away. I just was released from the hospital yesterday. I still feel terrible! Loosing alot of blood, in & out of the bathroom, alot of pain etc. He asked if I was going back to work until the surgery! I'm not sure how to take this...I feel guilty for laying around at home, but I honestly can barley get out of bed. I know he is stressed b/c I will be out of work for so long. I just don't know how to handle everything. Has anyone been in the same situation?
Posted 10/17/2011 8:59 PM (GMT 0)
Yup! I was out of work for weeks before my surgery. Couldn't have gone if I wanted to. I was losing tons of blood, barely eating, in so much pain, etc. I am single and live alone. I was really worried about not working, but my family came through and helped me, thankfully. Don't feel bad about not working. You just got out of the hospital!! Is your husband nuts?

A question I would be sure to ask is are they going to mark you for your stoma and when? Because you need to make sure it's not in like a skin fold or something when you sit down, because that will cause leaks.

Otherwise seriously, just start planning for all the things you've wanted to do but are too sick to do. You will realize soon what you've been missing :) I was just like stripey, was barely in any pain after the surgery compared to the pain before the surgery. they'll give you plenty to make sure you're comfortable after surgery, too.
Posted 10/17/2011 10:27 PM (GMT 0)
So sorry you are feeling stressed. You have to take care of yourself. You are about to have major surgery in a little over a week. If you are like I was before surgery...and you sound like you are...you are in no shape to go to work. Explain to your husband that you just cannot physically do it. My hubby was great too through my UC illness and then the surgeries but sometimes he just didn't have a clue. They don't understand what it's like even though they see how sick you are.

I second the stoma question. You and the little bugger are together for a bit and a well placed stoma will be a lot easier to deal with. I wished I had asked more questions about the ileostomy supplies too. I just used whatever the nurses gave me when I left the hospital and I should have insisted on seeing different brands. All the ileo stuff was a bit overwhelming. Also, when you are ready to be discharged, ask them to set up a home care nurse to come to your home the first week or so that you are home. It was a great comfort to me to have a nurse there when I changed my appliance for the first time. It's a bit nerve wracking! Once you do it a few times, then it's nothing.

If you have any specific questions, please feel free to ask.
Posted 10/18/2011 2:16 AM (GMT 0)
Thanks. That makes me feel much better ( especially the part about being out of work ). My support system is just great, but no one will ever fully know the extent of how we feel. Sometimes, I don't even realize how sick I really am.

That makes alot of sense about the stoma placement. I'm pretty small too so, I was already worried how the bag and everything would actually fit on me and stay covered. I got online today to look at stoma pictures etc. I really wished I hadn't b/c I had a freak out moment. I'm very concerned I'm not going to be able to handle the site & cleaning. However, I KNOW I can't go on like this. I'm literally been on pain meds after every meal I eat since I left the hospital! The steroids make me sooo..hungry, but food is by far my worst enemy. :)

What about scars? Do they look really bad? I'm scared I will look all misshapen. Also, this may be a stupid question but I were you guys able to handle your daily hygiene care after the surgery? Am I looking at not being able to even sit up the day after? Will I be hungry or be able to eat after the surgery? Will the stoma hurt the first time it is changed and cleaned?
Posted 10/18/2011 2:41 AM (GMT 0)
As the others have said, it's understandable to be feeling the way you are right now. Most of us did before surgery.

As for "I'm very concerned I'm not going to be able to handle the site & cleaning." I was doing it all by myself at 10 years of age, so I know you'll be able to do it too :) My parents only ever saw my stoma once while I was in hospital. While in the hospital, the stoma nurse will help you and show you what needs to be done, so don't worry about that. I was in hospital for two weeks and wasn't allowed out until I could prove I could do it on my own.

As a consequence, once I got out, I did all the emptying and changing without any help. Some people get their partner to help them but, in my opinion, it's so much easier to do it myself. For me, another pair of hands would just get in the way lol
Posted 10/18/2011 11:32 AM (GMT 0)
As I said before, the part that's hard to have in the mix is that you'll feel so much better. I was a bit freaked out by the stoma pictures too (although I also thought it kind of cool that I'd get to see my small intestine), but now I really like my stoma, because it's the thing that makes me not sick all the time.... although it does seem like in some ways it's easier to accept when it's permanent.

Besides the nurses at the hospital, you'll probably have a home nurse come to help you the first change or two -- makes a big difference.

At first you won't be able to eat food, you'll get clear liquids, then ease into food. I wasn't hungry right away, but I'm not sure if this is the same for everyone. I know I started getting hungry before I was able to eat very much, but that part isn't very memorable now.

Are you going into surgery on 40 mg of pred or are you tapering down some? I had to go down 10 mg a week to get from 40 to 20 for my surgery... surgeon didn't care if I was on 40, but my gi did because I'd been on a lot of pred the previous 2 years. It does mess w/your appetite a lot at 40 mg, I know.... it is good to eat once you can, though, especially protein, as that will help you heal.

One thing to be aware of is that your healing will be a little slower because you're on the pred. I presume they'll have you start getting off it right after the surgery.... I was so happy when I was finally done.

I had mine lapro, so no experience w/the bigger scars, but lots of folks here had open incision.

Hang in..... better times are ahead.
Posted 10/18/2011 1:38 PM (GMT 0)
I was a bit freaked out I admit to see my stoma upon waking up but I got used to it real quick. Try not to worry about that. I was pretty out of it the first 2 days after surgery b/c of the pain meds. I don't remember much. My hubby said I kept saying goofy things and laughing. So I guess I couldn't have been too bad! By day three I was sitting up and watching TV. I was not hungry though at all until maybe day 5. I was there for 8 days total. My stoma did not hurt when it was time to change everything. Mine was done lapro so I have some small scars. I kind of like my scars....they are my battle wounds!
Posted 10/18/2011 9:26 PM (GMT 0)
Thanks everyone. Your comments are making me feel so much better. Side note...I left the surgeon's office today, and I am currently being admitted into the hospital. I was still so sick they are doing the surgery this Thursday! I am sitting here waiting for my room. I am so scared, but a little excited. I am in so much pain right now from the colitis I'm somewhat glad they decided to admit me and get it over with!
Posted 10/18/2011 9:59 PM (GMT 0)
Oh I feel for you Jellybean because I was in the exact same boat. You know what is amazing though? Even through your post op discomfort you will notice that the pain your diseased colon caused you is gone. I actually felt "better" right away after surgery. Best wishes on Thursday you will do great!
Posted 10/19/2011 2:19 AM (GMT 0)
Best wishes on Thursday! Soon this will all be behind you. Just like ByeByeUC said, it is amazing when you wake up and the pain you have been dealing with for so long is gone. Sure the pain from surgery can be intense (though well-controlled with meds), but I had this amazingly peaceful feeling right after my surgery knowing that I was finally rid of the diseased colon that had made me so incredibly ill.
Posted 10/19/2011 12:47 PM (GMT 0)
Good luck tomorrow!

Have you seen an ostomy nurse yet? If not, ask so that he or she can help you place the stoma before surgery. I know you're sick now, but you won't be later, and it really helps to have the stoma in a good place.

I understand being glad to be in the hospital when you're so sick.... but the end is in sight!

Hope all goes very smoothly....
Posted 10/19/2011 1:59 PM (GMT 0)
     I suffered with ulcerative proctitis for twelve years before having surgery.  However, I believe I had IBS since childhood, but, didn't start with the bleeding, severe urgency and terrible cramping until I was 52 yrs old!

     After my initial hospitalization and diagnosis in 1998, I did enjoy a two year remission.  But, in 2000 I suffered another flare, then another two year remission.  After 2002, I started flaring yearly, then twice a year and after my second hospitalization in 2008, never was able to achieve remission again.  I ran the gamut of meds from 6MP through Remicade, then Humira.  Nothing helped.  I became prednisone dependent and had a total colectomy with end ileostomy on June 28th of 2010.  Had I known what was in store for me twelve years ago, I would have had the surgery then.  But, hindsight is 20/20. 

     My GI doctor would NOT refer me to a surgeon.  So, thank GOD for the internet.  I chose to have the surgery in Philadelphia since I live in south Jersey and do not trust the surgeons nor the hospitals to conduct major surgery on this side of the bridge..lol.

     My surgeon, Dr. Robert Fry, is head of colorectal surgery at Penn Med.  He told me I was not a candidate for j-pouch because of #1) my age at the time, 63.  #2) extensive use of prednisone which can hinder healing time and #3) other health issues such as very high blood pressure (thanks to prednisone) and prednisone induced type 2 Diabetes.  I told him I had no problem with the idea of wearing a "bag", I just was sooo sick of being sick.  He suggested I wait six weeks to make sure the Humira was completely out of my system and to see if I could taper my prednisone to a lesser dose.

     At time of surgery I was able to cut down the prednisone to 20 mgm.  I had a few blips but had wonderful care from the surgical staff.  It was a long recovery for me, but I am sooooooo much better now.  My blood pressure is controlled by only 1 pill a day instead 3 different meds and I no longer have type 2 Diabetes.  Before surgery I took anywhere from 17-25 pills daily, I now take only 1 pill yeah .  I will forever have osteoporosis thanks to prednisone but I have my life back.

     The best of luck to you.  You will be in my prayers.  Keep us posted on your recovery.  God bless.

Posted 10/21/2011 7:31 PM (GMT 0)
Hope the surgery went well yesterday.
✚ New Topic ✚ Reply